Rare disease

Information includes a list of rare diseases and the definition of the term orphan disease, which is sometimes used as a synonym for rare disease

11 Likes, 3 Comments - Chronic Love (@chronic.illness.help.xx) on Instagram: “A lot of people don’t know what we are facing everyday, but they pretend that they do. They relate…”

Did you know that Rare Disease affects 1 on 10 Americans, 30 million people in the US. Rare Disease Day formed to build awareness, educate and provide connections and resources to help those affected by rare disease disorders. If you or someone in your life has a rare disease support is here for you. Click […]

Rare Disease Day - Rare Disease Day for those with rare or rarely known disease.

"I know more about my disease than my own doctor does."

Having a rare disease can make it very lonely for the afflicted one, as well as having to explain your disease to everyone, including some health care professionals. In nursing school most rare diseases are passed by briefly, I am really good at learning about diseases that someone I know has, for example, others I […]

"I know more about my disease than my own doctor does."

Today is Leap Year Day, and it’s also Rare Disease Day. Since we have an extra day this year, why not raise awareness for infants, children, teens, young adults, and adult-adults with misunde…

There are some things that only people with chronic illness and invisible illness understand. There situations are familiar for all of us. How do you know you are a Chargie? When these all resonate with you, you are a Chargie! People with a rare disease are called Zebra's. It comes from an old saying they used to teach doctors in medical school. "When you hear hoof beats, think horses, not zebras." It means to look for the more common causes , do go looking for the rare diagnosis. In our…

Reality of Living With a Rare Disease | The Mighty #raredisease